On the underside of her wrist, actress Marianne Leone has a small black tattoo of her son’s name, Jesse, etched in script above an infinity symbol. Leone had planned to bring Jesse to get his own tattoo when he turned 18, but he died in 2005 at age 17 from complications of a seizure disorder.

Jody Feinberg

On the underside of her wrist, actress Marianne Leone has a small black tattoo of her son’s name, Jesse, etched in script above an infinity symbol. Leone had planned to bring Jesse to get his own tattoo when he turned 18, but he died in 2005 at age 17 from complications of a seizure disorder.

Getting a tattoo should have marked the start of young adulthood for Jesse, whose cerebral palsy left him unable to control his body or speak. Instead, the tattoo became a symbol of Jesse, who was also an honor roll student. He loved to laugh, learn and write poetry.

“Today, the tattoo is an exuberant shout, a testimony to Jesse’s being in the world; an affirmation of his own wish to proclaim it,” wrote Leone in her new memoir “Knowing Jesse: A Mother’s Memoir of Grief, Grace and Everyday Bliss.”

“(The tattoo is also a) reminder that I was and will be his mother every day for the rest of my life,” said Leone.

The memoir mourns Jesse’s death and celebrates his life. While the tattoo is private, the book shares Jesse with the public with writing that is passionate, vivid and, at times, even funny. Readers get to know him and the joy he brought to Leone and her husband, Academy Award-winning actor Chris Cooper.

The book is also a story about the couple’s fierce love for their only child and their struggles to get medical and educational experts to recognize his potential and provide the necessary care.

“I wrote it to spend time with Jesse and tell his story. I loved writing it because I felt close to him,” said Leone. “People refer to him as a burden, but we never saw him that way. He was a joy to us, and a teacher. The feeling of loss never goes away.”

Leone said she and Cooper had a big learning curve after Jesse, born two and a half months premature, suffered a cerebral hemorrhage, the cause of his cerebral palsy. As actors, though, they were quick to understand Jesse through his eyes, facial expressions and vocalizations.

“I was taught (in acting classes) to ignore the words and to answer only what I heard under the words,” wrote Leone, who met Cooper in a New York City acting class. “What Chris and I didn’t know then was that we were in basic training for Jesse, and that the core of our communication with Jesse was powered by something else –– driven by a hunger to know him, like the hunger that drives mystics to know God.”

When Jesse started communicating through an “eye-gaze” computer at 7, and later a Mac laptop adapted to his one deliberate movement (a raking grasp), other people could see what Leone knew from the time Jesse was a baby: he was very intelligent.

But some doctors and educators refused, or were unable, to see his mind and spirit, telling Leone that she was “in denial” about his potential. One teacher advised that she “really needs to learn to let go; we don’t know the life expectancy of a CP kid.” In telling Jesse’s story, Leone lets loose the anger and outrage she felt toward these professionals.

Seeking a better education for Jesse, the couple left the New York City area for Kingston, Mass., where Leone had spent her summers with an uncle. But they were soon battling the special education director in Kingston, too.

With the help of mentor Mary Somoza, special needs advocate Jean Vecchiarello and a parents’ group, Leone finally secured a place for Jesse in a regular second-grade classroom with his own aide and adapted resources. Until his final year as a sophomore, Jesse took part in regular classes in the morning and was tutored at home in the afternoon. He not only excelled academically, but he made friends as well.

“I would never pretend to say to parents, ‘Read my book and follow what I did,’” said Leone. “But the basic principal is that you need to believe in your child and advocate for him.”

Although some professionals were insensitive or callous, many had the warmth and openness to connect with Jesse. Leone wrote appreciatively of the pediatrician who kissed him and proclaimed, “Look at this beautiful boy!” There were neurologists who took the time to get to know Jesse and improve his life. There were young women who lived with the family, becoming both playful big sisters and devoted attendants to Jesse.

In many ways, Jesse had a very full life. Leone and Cooper read him Greek myths, poetry and the classics. They took him to concerts and plays. He windsurfed and played video games. He had lunch with Jim Carrey, attended the Academy Awards and visited Italy, Prague and Paris. And every day he was lovingly touched.

At times, Leone lived like a single mother because of the film commitments of Cooper, who won an Oscar for supporting actor in “Adaptation.” Yet, their strong emotional bond supported her, and it held them together as they grieved Jesse’s death.

She wrote eloquently that they avoided “the threat of bursting apart like seedpods and falling to the ground in separate, dried-out halves now that Jesse was scattered to the wind and lost to us in life.” Instead, she wrote, “We cling to each other, but not like desperate survivors. We hold each other like lovers, like partners, like battle-hardened veterans at a reunion 25 years later.”

Since Jesse died, there have been occasional days when Leone has taken her grief to bed with her. But, typically, she is busy acting and writing screenplays, essays and opinion pieces; and heading the Jesse Cooper Foundation, which helps special needs children participate in school and adapted sports.

After Jesse died, Leone appeared for four seasons in “The Sopranos” as Joanne Moltisanti, a widow and mother whose son dies.

On difficult days, like Jesse’s birthday and the anniversary of his death, Leone challenges herself to stay engaged with people, even when she wants “to stay inside and be alone.” Since the release of “Knowing Jesse,” Leone has been moved by the e-mails and letters she has received.